Stephen's special heart

Stephen Behun (glasses) races with his younger siblings, Will and Katie, despite what some would consider a handicap - a three chambered heart.

Tamaqua youth unstoppable despite HLHS syndrome

By KATHY KUNKEL kkunkel@tnonline.com

Okay, he turns blue once in a while, but that doesn't stop seven year old Stephen Behun of Tamaqua from doing anything and everything every other boy his age does.

Climbing trees, playing tag, wrestling, swimming, karate and fighting space aliens are just a few of the pastimes of this dynamo. Sounds like your everyday, average first grader, but Stephen is just a teeny bit different. He does it with a three chambered heart, instead of the four chambers like his friends' hearts.

Stephen wasn't even supposed to make it past the first year, or, if he did, he'd face significant health and cognitive issues. His parents, Stephen and Liz (Pinkey) Behun were told he wouldn't develop as other children, IF he survived. There would be no milestones such as a first step. That was the first specialist they visited. Boy, was he ever wrong.

Instead, the family sought out a second opinion at Children's Hospital of Philadelphia. Stephen was diagnosed, in utero, with Hypoplastic Left Heart Syndrome (HLHS). His first surgery was performed within 23 hours of his birth on May 25, 2006. A second surgery was done in October of that year, and a third on Sept. 18, 2008. Since then, nothing has been able to stop him.

"Following his third surgery," reminisces his mom, Liz, "we would have loved to cover him in bubble wrap to keep him safe, warm and dry, but decided that probably wasn't a very good idea." Dad Steve notes, "Stephen has come through so much and it just wouldn't be fair to try and hold him back just because it would make us feel better." Classmates and friends know Stephen has a health issue, but follow his lead and treat it as a matter of fact, with little discussion.

During the last year, Stephen has become active in wrestling and swimming, making his scars more noticeable, leading to a few stares and lots of questions. Usually, he just tells people he "has a special heart and the doctors needed to fix it when he was little." (Except for the time he tried to tell an opponent he was an alien and that's where the doctors removed his alien parts to fool the humans.)

His first grade teacher at Our Lady of Angels Academy, Sarah Boyle, describes her student as someone "who works very hard to achieve good grades. He loves to be personally challenged as well as help any of his friends who may need a little extra support. At the beginning of the school year, his parents and I discussed his health and concerns expressed by some doctors as to how he would progress academically. He has gone well above and beyond any of their expectations. Stephen has a way of connecting in a special way with the other children as well as the adults in his life. His classmates look up to him and cherish their friendship. His teachers love his enthusiasm for learning and his drive for success. I'm grateful I had the chance to teach him!"

So, last Fall, when Mrs. Boyle told her class about a contest offered by PBS KIDS GO!, where children write a book and compete for prizes, she wasn't surprised when Stephen took up the challenge. At first, it was hard for him to try and focus on a topic for his book. But, as he continued to explain his special heart to his new friends and competitors, the idea of writing about that heart grew firmer. So, the then six year old decided to write and illustrate his autobiography.

With the help of some online resources and worksheets, along with the encouragement of his parents and teacher, "Stephen and His Special Heart" became a reality and was submitted to PBS station WLVT in the Lehigh Valley. In early May, he was notified he had won first place in the first grade category. His book was then entered into the national competition, with the winners to be announced in early July of 2013.

In the book, Stephen describes his special heart and the very special things it allows him to do, such as "be brave at the doctors, get good grades in school, win wrestling trophies, be a good big brother, swim the length of the pool underwater and turn blue when he runs very fast." He is also very proud of the fact that he can "fight Cragon monsters and aliens," even if it is only on the computer and in his imagination.

As for the future, Stephen hopes he can win first place in the book writing contest, as one of the prizes is a laptop computer. And yes, his parents have a computer, as does his Grammy. But, he shares those computers with the family, which includes his younger brother and sister, Will and Kate. If he could win his own computer, every day would be as good as Friday, which is when he "doesn't have to share Grammy's computer."

When he grows up, he wants to travel in outer space ... to fight those darn aliens.